In Liver Life we feature many children and young adults who are coping brilliantly with their liver condition. But what happens after that? What’s it like to be a ‘proper grown up’ with a childhood liver disease? Here Giles Hider, aged 44, who has alpha 1 antitrypsin deficiency, gives us an insight.
When I was born in September 1976 there was no CLDF. My mum tells me that I developed quite a large pot belly during my first couple of years and when I was three, tests revealed I had an enlarged spleen.
This only became an issue when I was eight years old and like every other kid in 1984, I wanted a BMX bike. This set off a warning bell with my mum who had read about BMX riders damaging their spleens when falling off their bikes. She contacted our GP for advice, we were referred for tests and this time they confirmed that I still had an enlarged spleen, but I also had alpha-1 antitrypsin deficiency.
Alpha-1 is a genetic disorder. To have the condition, you must receive two faulty genes, one from each of your parents. Because so little was known about it in those days, I was asked to attend King’s College Hospital to participate in further tests to aid research. I even remember one of the King’s researchers coming to a family gathering to take blood samples!
After that, apart from six monthly visits to hospital, life was not greatly different from me although due to my enlarged spleen, I was advised against taking part in contact sports.
Likewise, at university I felt no different to any other student, although on the advice of my doctor, I avoided smoking and alcohol. Whenever people asked me why, I would just explain. Because I was honest with people, I found that they respected this reason and I was never pressured into drinking.
It was just after university that having alpha 1 caused my only real disappointment in life. I had always wanted to join the Royal Air Force but was told I wasn’t eligible, due to my condition. So I decided that if I could not join the Royal Air Force, I would work for a company that designed and built aircraft.
In 2002, I moved to Somerset to work for a helicopter manufacturer. It was here that I met my wife. We were married in 2007, (when I admit I did have a glass of champagne!). Before starting our family, we asked for my wife to be tested for alpha-1 antitrypsin deficiency. Happily, the results revealed that both of her associated genes were normal. We now have a son and daughter and neither of them have alpha-1, although both are carriers.
I am now 41 years old, I don’t take any form of medication, but I do attend my local hospital for annual observations and tests. Maybe I will need a liver transplant one day. We don’t know. In the meantime, I don’t allow alpha-1 antitrypsin deficiency to rule my life or my family’s.
I really hope that my story is helpful to children with this condition, and their parents. My final word to anyone with this condition is do not allow it to be an obstacle and continue to live your life to the full.
Caption: Giles does not let alpha 1 rule his family life.